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Closed Facebook Support Group

In this online group you will gain access to an active group of people in Canada living at-risk for, living with or caring for someone with Huntington disease (HD).  Individuals in this group will be asking questions, answering your questions and sharing stories of hope and support.

In order to participate, you will need to become a member. Admins will use their discretion to approve members of the group and have the right to remove posts and/or members at any time. Anyone can see who is a member of these groups but cannot see what has been posted.

By requesting access to the HSC Closed Facebook Support Group, you are agreeing to the following: 

  • The HSC Closed Facebook Support Group is offered to facilitate support and communication between individuals affected by Huntington Disease. It is not intended to replace the advice or instruction of a professional healthcare practitioner, or to substitute for medical care. We urge you to seek specific medical advice on individual matters of concern. If you are in crisis and need emergency assistance, please call a crisis line or your local emergency services.
  • Posts deemed to be promoting a service or product or slandering individuals or organizations will be removed. Please review the Online Etiquette information below for additional guidelines.
  • While closed, new members can be added at any time and therefore we advise you to consider this group as a public forum. Members are strongly advised not to share personal identifiers such as email address, telephone, street address, etc. that can be used to identify you and link you to the content you provide.
  • Members are advised that information obtained from a physician should be considered more up-to-date and accurate than the information in the group and that this group does not and cannot claim to address facts and circumstances particular to any patient. This is something that can only be done by the patient’s physician.
  • The Huntington Society of Canada does not endorse or recommend any particular form or forms of therapy, regimen, or behaviour that may be discussed.
  • Huntington Society of Canada is funded entirely through generous donations from individuals, corporations, and employee groups as well as through memorial gifts, planned giving and special events. Therefore, we respectfully ask that you do not fundraise for any cause other than Huntington Society of Canada. This includes no links to crowdfunding and fundraising sites such as GoFundMe accounts please.

If you agree to the above:

Please click here to join the general Closed Facebook Support Group.

Should you have any questions or queries, or wish to report a violation of the terms listed above, please contact:

Corey Janke
National Social Worker – Huntington Society of Canada

Online Etiquette

Online Etiquette
The Huntington Society of Canada (HSC) encourages you to be responsible and to respect the Huntington Disease (HD) community as well as other participants in the Online Peer Support Centre and through external online tools such as, but not limited to, Facebook and Twitter. Your conduct should be guided by common sense, basic etiquette, and the following rules.

We prohibit any of the following:

  • Use of explicit, vulgar or obscene language
  • Exploitation of a minor (any person under the age of 18)
  • Discussion or inciting illegal activity, such as how to build a bomb, counterfeit money, etc.
  • Posting of or referencing of sexually explicit images or other offensive content
  • Use of racially or ethnically offensive language
  • Disruption of the flow of chat in chat rooms with vulgar language, abusiveness, hitting the return key repeatedly or inputting large images so the screen goes by too fast to read, etc.
  • Solicitation for the exchange of sexually explicit images, and/or material harmful to minors; including but not limited to any photograph, film, video, picture, or computer generated image or picture (actual or simulated)
  • Harassment of, threats towards or embarrassment of a chat participant, or other unwanted actions
  • Offer of products or services for sale
  • Infringement of anyone else’s intellectual property rights, including but not limited to any copyright, trademark, rights of publicity, or other proprietary rights
  • Impersonation or misrepresentation of Huntington Society of Canada, Huntington Society of Canada staff, or community leaders
  • Collection of email addresses
  • Posting of or request for personal or other information from a minor (any person under the age of 18), including, without limitation, any of the following: full name, home address, telephone number, picture, or the name of their school

HSC reserves the right to remove inflammatory posts including messages, photos, links, videos or any other material deemed to be disruptive to the HD community.  Huntington Society of Canada also reserves the right to block or ban users from posting on web properties including the message board and social media who are soliciting products, creating posts considered to be ‘spam’. Violation of any of the above listed rules may result in post removal and/or banning of user.

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